I would never have believed just how difficult it is to do nothing. I’m not talking about sitting in one place staring at the TV, no, that’s easy, that’s what we have spent most of our lives being trained by the entertainment moguls to do, and boy have they done a good job on that one. I know that kind of nothing is something I have always struggled with, but this type of nothing, this type of nothing is so much harder and so totally different. This type of nothing is far more intense and far far more difficult to even get your head around, believe me.

Many might think that the physicality of doing “nothing” would be the hardest part, that inability to do even the simplest things for ourselves, but the physical is easy. You adapt, you slowly accept that your home will never look the way it did, that housework is nothing but a memory, and dinners to be proud of, well almost fictional. Even as we lose our dexterity, the ability to dress, to manage those buttons and zippers, or to even to wash ourselves, there is a calm acceptance that appears from nowhere and takes over. Where it comes from, how it even forms is beyond me, it feels almost instinctive something that nature has taken care of and is set deep inside. If only the same could be said for what happens in our minds.

There are times when you are living with a chronic condition where your health takes over and mentally there is nothing you can do. Saying that, makes it sound like it’s a fait accompli, despite the fact it’s out with our control it’s not what we want. Even when our brains are as numb as our outer side looks, part of us still yearns to be anything, other than what we have become. We’re that lump, that just sits or lies there apparently doing nothing and too tired to fight for the life we once had. Yes, we have brief spells of appearing as though we are ourselves, but the rest of the time, we’re lost. The flow of life has turned from a torrent of events, to being becalmed and stranded miles from not just land, but far more painfully, from the nearest person we know. Life has become a stagnant silence, broken only by the voice that screams inside us, the voice that sounds so clear, so logical to ourselves. We listen to it all day long, filling in the narrative of our memories and the actions we have to take. We hear ourselves just as we have always heard us, that at least hasn’t changed, that is until we try to let ourselves out. Reality, is always the same, a mess of stuttered confused sounds, sounds that are alien in every way possible.

Conversation is a case of guessing what we really heard, compared to the fragments that our brains have actually recognised as such. Concentration is an art that now escapes us, but it doesn’t stop us from trying, often with results that amuse those around us. We don’t always get those fragments right, nor the context in which they were said. Apologies flow thickly amidst what we hope will be passable as an answer before we are lost again. At times we get away with it, at others, we can hear and see the concern that our voice brings when heard. All the time we are yearning to just be able to connect, to feel part of what is happening around us, but we can’t, because we’re constantly been drawn back into doing nothing, and that’s where it gets truly hard. Having yearned all day to just have company, now that we have it, we’re still alone, as no one can truly join our isolation. Those few short hours of togetherness passes us by, aware of their presence, there but not there and before we know it, it’s once more the hour when sleep takes over and “nothing” doesn’t matter, as “nothing” is all there is.

When we’re alone, we kid ourselves that we’re fine, but all we are doing is drifting through a labyrinth of nothing, a labyrinth that we tell ourselves is normality, but we know isn’t. Somehow that makes it sound as though it should be easy to live with, as after all, how hard can “nothing” be, but the truth is, it’s incredibly hard because we know it’s all wrong. Just as wrong as the tiredness that drags us back over and over again to our beds, asleep is the only place where normality isn’t questionable. There is a joy in those endless hours of sleep, in being unaware of the fact that we are once more doing “nothing”, as it’s the only time that our conscious self, is switched off. Trust me, I have tried many a time to switch it off when awake, but I can’t. In fact, if we could, then life for us would be easy, as then, we wouldn’t be aware of all those things we’re not doing, like simply thinking in a logical fashion.

“Nothing” is painful, only because we are aware of it’s existence. There is no way of removing it, no way of coming to terms with it, it’s just there, always there and always reminding us that “nothing” is all we will ever do.


Please read my post from 2 years ago today – 19/12/2014 – It’s that time again

I found myself sitting here just doing nothing really, looking at things on line that I wasn’t even that interested in and this is normally my busiest time of day, something was wrong. It took me until I had dragged myself away and I was standing in the kitchen not really keen to get a bowl out of the cupboard…..

So what do I do?

“Tired”. I am so fed up of saying that word! It is as though “tired” has taken over my life, but what else can you say, when you husband is looking at you with deep concern, and asking yet again, “Are you OK?” “I’m fine, I’m just tired”. I know it’s not the right word, but saying “I’m deeply fatigued” somehow seems like a rather large mouthful, and when you are this “tired”, anything that takes less thought and less action, is welcome. Sometimes I wish that he didn’t keep asking me, but then, if he didn’t, I’d wonder if he was OK, because he is always asking me, and I love him for it. But none of that changes one fact, I’m fed up having to say, “I’m Tired”.

On a normal night, I sleep right through eleven and half hours, after which, I’m tired, and that is how I spend my day, locked in a cycle of varying levels of tired. At my worst, I’m fighting to keep my eyes open through the hours that I am supposed to be busy. I tweet, I write, I organise and I play cards, determined to stay awake and determined to not give into returning to my bed. For the last couple of years, I have spent each day in exactly the same way, as if I give in, I fear that all I will ever do is sleep. Determined to have a life of some sort, as otherwise, what life would I have? Between my nights and my naps, I already spend more than half of every day asleep, how much more can I lose to it, and still class myself as having a life? How much more before my life becomes nothing but sleeping, eating and sleeping again?

Seriously, I have lately been considering lengthening my night sleep where possible, that is the time I have before the alarm clock demands I’m awake. I could with ease, have four days out of seven, where I don’t get up until 10am instead of 8:30am. The other three, well, I have to be up due to the time that the district nurses arrive, but there are those other four days, where that alarm change would at least give me the option to sleep on if, I want or needed to. I doubt that to begin with, I will sleep through many of them, as habit is a very strong driving force and I’ve had years of habit-forming alarm clocks. There are two reasons that I haven’t done this sooner, firstly Adam, yes I know that might sound like an odd one, but he has a bad habit of sleeping past his alarm. If I am up at 8:30, well yes he is late for work, but only by minutes, not hours. The second, I’m scared that I might sleep right the way through to 10am, and that really does scare me. If I can sleep through to 10am, how long might I sleep, without the alarm set at all?

Tired is a mine field! A very big and very scary minefield, that knows exactly how to piss me off! I fear it because somewhere inside me, there is this voice saying you might need to be asleep for far more time every day than you already are. That being “tired” isn’t just another annoying symptom of my health, but one that is slowly taking over my life, what little of it is left. How have I gone from someone who slept between 4 and 6 hours a night, never rested at all during the day and when possible, never even sat still, to someone who hardly moves and simply wants to sleep constantly? Even worse, I’ve changed into someone who sometimes, quite honestly doesn’t want to even fight it any longer.

I thought that when we bought my electric chair, that it would give me more energy, it hasn’t. It’s great, don’t get me wrong. There is now a joy in moving around the house that has been missing for a long while, and I can actually now do things at speed, but despite no longer having to drag myself around by my arms, but the fatigue hasn’t moved at all. I’m still tired, so damn tired. Another great idea, that hasn’t turned out the way that I planned.

When I agreed it was time to have a carer to help me, I thought then that this tiredness would lift, it hasn’t. Laura is great, she does everything that I need, but the help she gives me, means I all too often, have to work as well myself. I worked out what we could afford, and fitted in the help I needed to fit what we could afford, not to what I really needed. If I am being honest, I could do with having her here for an hour five days a week, not half an hour three times a week, plus of course, my showers on top. How can it be right that our health always comes down to what we can afford, rather than what we need? How can it be right that I am always this tired?

Before anyone says it, yes, I know there’s a drug that keeps you awake. I tried them years ago as I was struggling at the time because of work. Adam said that they were basically a legal version of speed and that they gave those meds to fighter pilots to keep them awake. Well, I’m glad I wasn’t a fighter pilot, as, within months, I was once more struggling with work. I ditched them and didn’t feel any change what so ever. No matter what I do, there seems to be only one option, to try and get more sleep, I just fear that if I do, I’m just going to crave even more. So what do you do, when “tired” has taken over your life?


Please read my blog from 2 years ago today – 10/12/2014 – Step eight

I found myself staring at the globe on the top of my blog, I haven’t looked at it for several weeks, I seem to go through phases of being transfixed by it, then ignoring it. When I was checking the spread of the little dots, I suddenly had this mad idea about getting a dot in every country on……

It still hurts

If there is one thing that living with chronic illness that we become good at, it’s dealing with loss. Loss of friends, work, hobbies, families and even those we thought would be with us forever. Loss goes hand in hand with illness and some of us get so used to it, that we see it as something we are actually good at. Quite often when we lose something, we can replace it, and often that replacement turns out to be even better than it’s original. But I guess that all of us have one thing that is just too painful, too big for us to ever replace, or ever get over. In some ways, I am lucky, as that one thing for me, only comes around once a year. In others, I’m unlucky as there is absolutely nothing I can do to avoid it, as whatever I do or where ever I look it’s there. Well, how do you avoid Christmas?

Christmas for me lasted four months, from the point it was time to bake the Christmas cake and pudding, to the last chance there was to buy cut-price decorations, cards and wrapping paper that the shops don’t want to store till next year. Actually, it didn’t even really end there, as I bought present all year round, whenever I found that perfect thing for each and every person I knew, I squirrelled it away, this, that, and everything that said Christmas and I did it with love and total joy on my part. Then came my last Christmas, the last chance to give all those gifts, to enjoy every second of decorating my home and making the whole season special in every way. All of it was taken away and there was nothing to replace it.

For those who can’t quite see how my health stole Christmas, well it’s easy, it did two things that ensured that Christmas was over. First, it took my ability to work and therefore the money I needed to spend on all those parts needed for the big show. Then it stole my energy, my dexterity. I could no longer spend days decorating every room, setting our all those thousands of lights and ornaments, putting together those tiny details that turned our home into a Victorian tableau, but one better than any Victorian could ever have even dreamed of. It was designed with the exacting perfection, every ornaments placement and angled perfectly for a viewer’s eye. Days of planning, days of work and years of collecting all gone, just like that.

The first year that I knew I could no longer do all that was needed, I thought I could manage a scaled down version, but scaling down, just didn’t work, it wasn’t right and every second that it was wrong, hurt me. A scaled down Christmas was worse than no Christmas at all. The second, I let Adam do all the work, while I sat there like some kind of short-tempered director, being driven mad by a performer who could never deliver their lines, in the way they were in my head. Followed by my secretly spent hour after painful hour, trying to make the surface correct, even though the correct foundations were missing. The third, I banned Christmas, not even one single tree, nor a single ornament was unpacked and I found peace. My home as it is, without Christmas was better than a pale imitation. Yet, here I am on our fourth December without Christmas, and I can still see every single perfect tree, even without closing my eyes. Just as an amputee still feels their toes, I can still see Christmas around me, just as it should be at this stage of the month, everything done, everything complete, parcels completed with decorations all of their own, concealing there equally perfectly thought out gifts, all just waiting for the big day.

I coped when I found that I could no longer work. I replaced all the things I lost, one by one I could manage but all these years on, I still miss Christmas and there is no replacement, there is nothing that can take its place, nothing that can even come close. How do you ignore something so big, something that is on TV from November onwards? How do you replace something that is irreplaceable? If it wasn’t bad enough that I’m being forced by my health to live without it, I’m also being tortured by the world, telling me just what I’m missing every second of the day. And worse still, I feel like Scrooge, because I’m taking Christmas away from Adam, just so I can hold onto a little sanity throughout this month of the year.

Chronic illness sucks. It sucks in so many ways including the odd ones like this that aren’t directly the fault of my health. People try to understand when it comes to our bodies letting us down, but they don’t understand, when it something odd like this. I’ve been told that I’m being silly, that not everything can be perfect any longer and that I should accept it as it is. Well here’s the crunch, I’ve accepted it throughout my illness, my home isn’t perfect any day of the year, but Christmas is big, it’s flashy, it’s amazing and for me, it has to be perfect, otherwise, it’s not worth doing at all. We still celebrate the day, like all we eat too much good food, but now, it’s just the two of us. No gifts, no crackers, no table perfectly set with candles set among crystallised flowers, everything that the modern world and my brain says belongs as part of Christmas, are all missing. What we lose, isn’t always what others see. What we lose is often far more personal and completely invisible, and somehow, because it is so personal, it hurts even more.


Please read my blog from 2 years ago today – 06/12/2014 – The past is never buried

I am sure that I am not the only person who has found themselves with a strange desire to do something, but when thought through, well it just seems stupid. Yesterday after I had finished my post I once again had this desire to email my old agent from when I was a DJ. I was triggered a couple of months ago…..